Where the hell have I been these past few months? Well, ever since my last episode with radiation of a painful bone tumor in my sacrum, I seem to have misplaced my voice. It could likely be lost among my yarn stash, but if only were it that simple. For not only have I misplaced my voice, but I am afraid to venture out into the world. Instead, I prefer to stay inside my little nest. On some level I must think that if I just stay here everything will stay like it is and I won’t hurt anymore. Hey, it’s not like I don’t have cause.

I’ve been in pain since September 2012, the cause of this direct and indirect pain has been the bone lesions in L4 and my sacrum. Last summer the crisis was all about L4: narcotics, bowel impaction, nerve ablation, radiation. The Letrozole I was taking from May through December caused such fatigue and joint pain. With it I had no quality of life and it made working next to impossible. I finally stopped it in December and though it took a few weeks, on January 27 I woke up with energy. Real energy! FINALLY! I felt like myself again. Exemestane was easier on my body and I was hopeful for the future. And then, two weeks later, BAM! The lesion in my sacrum placed me flat on my back. I had only been back at the office for two days. TWO DAYS!

From lessons learned last summer, the process of diagnosis and treatment was faster and I was down for about seven weeks–as opposed to 15. Radiation didn’t freak me out like it did last year and the nerve ablation was a piece of cake. I experienced some brief depression at the end, just as before. But as excited as I was to return to the office I found–and continue to find–it very hard to move out into the world.

To be sure, I feel wonderful. I am able to walk (in moderation)! In some sense, I feel almost as good as I did before I was diagnosed. I stroll along the streets with a real smile on my face (and in the beginning walked so much that I pulled a groin muscle, but I digress). But apart from my walking success, I feel as if I am sitting on the edge of the chair, just ready to rise up, but all I can do is stay in place. And because I feel as if I’m being tossed around in a dryer at the moment, this might be the most incoherent post I’ve written thus far.

For one thing I have an overwhelming feeling of guilt. So many women with Stage IV cancer are in more peril than I.Young mothers in precarious health. Men and women newly diagnosed. Yet here I am feeling wonderful. How can I have any right to feel so great when so many are still hurting, suffering, and seeing that expiration date speeding toward them at lightening speed? Well, none of this is in my control, of course, and I am not responsible for other people’s lives. However, it is not until you have cancer that your capacity to empathize gets thrown into overdrive. When you are well you feel the pain of others. When you feel your own pain, you want to help others feel better. At least that is how it is with me.

For another, I have been living in the “Scorchy Cocoon” for 18 months. That is 18 months of physical pain and emotional distress. Although I was well read and remained current with news and life, it really was Cancer 24/7: doctor’s visits, scans, tests, shots, and treatments. I felt pain all of the time. Every week I had something medical to do. Facebook became my outlet for sanity and keeping up with my friends and family because I couldn’t really travel anywhere–even in my neighborhood. I haven’t been that self-absorbed since I was thirteen. It was, in a very real sense, a kind of prison.

And now that I have been released from that prison and I don’t quite know what to do with myself.

My Job. Folks have been fine without me. I am so proud of my staff as they kept things moving so well. My previous boss had become vindictive and petty and, I believe, scared of my disease. I was afraid I would lose my job (though in academia you could walk naked through campus holding the standard to the 13th Roman Legion and still be employed). But after he left, senior management made it clear that I was an asset to the organization and they wanted me well and in place. My organization has been so supportive and I am grateful beyond measure. But after such a long break, I just naturally question my knowledge and expertise. I have disappeared from annual and local meetings. What is my worth? Do my colleagues feel that I have worth? Do my colleagues want what I have to offer? Indeed, do I even have anything to offer anymore?

Social Life. I want to be with my friends and enjoy the city. But I am cautious. I cannot plan for weeks in advance for I have no idea if I will be well on that date. Instead I live day to day–which is the hardest thing I have ever done. I can make plans, but my friends must understand that I may have to cancel at the last minute. And if I do that I feel guilty and weak. To date, my social life has consisted of the occasional dinner and logging into Facebook. Sex in the City indeed.

Cancer. I am a master at compartmentalization. With all of the baggage of life, I think I over compartmentalize. Indeed, it wasn’t until I began living with cancer that I realized I had a heightened ability to cloak those compartments in complete and total denial. Not just denial, but a veritable black hole of nothingness. I mean think about it: my entire diagnosis is a story of denial. Today, despite my past ignorance, I am in a good place: the two bone tumors that existed responded very well to radiation; scans are stable and improving; my pain is under control with the occasional flare. On paper, at least, I can live again.

One day I rose with my alarm, showered, dressed, and then just sat on a chair in my living room. I was paralyzed. I sat there for about an hour. I wasn’t in panic. Indeed, I sat there thinking of little more than the weather. And then simply decided I would not go in to the office. I undressed and spent the day as I had for the previous 18 months: in my PJs with cats. Once again I felt safe and secure.

But at the the same time I felt a tremendous sense of remorse and confusion. What the hell was I doing? I want to work. I love what I do. Why would I jeopardize not only my career but my entire life? I am no longer in prison, so why is it so hard to live?

After seeking some counsel, I decided that intellectual engagement may well be the thing that dissolves my fear of leaving my cocoon. That is to say that I need to immerse myself in my work once again and rediscover the real joy I feel in doing it. I went to the office yesterday, as a matter of fact, and I do think that this is the thing that will work for me.

As painful and confusing as my 18 month odyssey was, it was also a time of odd comfort. When I was under the weather, so to speak, friends rallied around me. They told me how much I was loved and how special I am to them. Friends and family really wanted to know about me. Gifts, favors, and treats arrived with love. I surrounded myself with soft blankets and comforting food and drink.

However, as I improved, many of those things naturally fell to the wayside with the expectation that it was now time to move on with my life. But after such a long time in crisis, I am now left raw and vulnerable. I need to relearn my limits, build my confidence, and live with some modicum of comfort with my disease. This transition from intense illness to wellness is a potentially fragile time for some of us–and we may not even be aware of it until it is upon us.

Intellectual engagement may be my path to easing the uncertainty of my future. Only time will tell. But I cannot possibly be the only person to experience this paralyzing fear of wellness. I just can’t be.

Physicians are focused on their specialty, fair enough, but they might do well to consider the emotional state of their patients as they transition from acute crisis to wellness (as well as wellness to illness). It may be a time of jubilation and excitement. But those feelings are expected to some degree, are they not? I know I told everyone how excited I was to return to my life. And I was. But under it all I was afraid and, even more so, embarrassed to admit that to anyone–even to myself.

I am confident that I will emerge from this mentally healthy and engaged. But like most things I have learned as a result of this cancer experience, transitioning from protracted illness to wellness is a delicate shift. And I don’t think it is on anyone’s radar. When faced with a challenge like this we need to be kind to ourselves first and foremost. Listen to that inner force–if it doesn’t feel right, then it isn’t. Our physicians need to be aware of this as well and ask their patients about how they feel about this transition and if they need help moving through it. Otherwise we may well find ourselves moving from one prison to another. Not only will that continue to cause mental distress, but that will not aid our physical condition.

No one deserves to live in a prison of uncertainty and fear. Least of all anyone who has been hit with cancer, regardless of type or stage. Ain’t nobody got time for that!

Recently I went on quite a tear when it was revealed that Kohl’s and Komen had co-opted METAvivor’s intellectual property for an ad campaign. It really rakes my last nerve when people do this; rather than call up an original idea–which I’m sure their advertising departments could have done–they chose to take an idea already copyrighted and trademarked. And what bothered me most was that the campaign, which had no mention of Stage IV breast cancer, was built on the backs of Stage IV women and men via METAvivor. But now there’s something else that’s got my pantyhose in a bunch.

I came across a project by photographer Charise Isis called Grace. Isis, inspired by Hellenic sculpture, has assembled a collection of photographs of women who have had mastectomies as an “exploration into the grace of their humanity.”

It is a project that speaks about the strength and beauty that women who have survived Breast Cancer possess. . . In photographing the project, I loosely use Hellenic sculpture as a visual reference for the portraits, taking inspiration from such artifacts as the “Venus De Milo” and “Nike of Samathrace”. These dismembered artifacts have survived the trauma of history and are still valued as objects of beauty within our culture.

Yawn.

People start taking photographs of women with mastectomy scars and suddenly it’s pushing the aesthetic envelope. It begs the audience to empathize and then hold these women in high esteem because they have a disease, have gone through treatment, and survived. It must be noted that women and men with breast cancer are no braver, stronger, or aesthetically pleasing than anyone else who goes through the experience of cancer. Then why the imagery?

Women–particularly their breasts–have been objectified for centuries. Now we witness the objectification of mastectomy scars. Indeed, Isis emphasized that sculptures of antiquity, despite their amputations and scars, survived and are “valued as objects of beauty within our culture.” Is the corollary, then, to value women as “objects of beauty” in society? Do mastectomy and further surgery scars become “objects” of beauty and bravery in breast cancer culture?

This project also perpetuates the iconic mythology of breast cancer–that to conquer breast cancer one must be strong and brave. It is the responsibility of the woman to defeat her disease and become a survivor. If she doesn’t survive? Well, she didn’t try hard enough.

Of course, in Grace they’ve all had cancer. We should not be surprised that women living with metastatic disease are absent from yet another pithy piece on breast cancer survivors. The ugly scars hold no interest if they are on a woman who has metastatic disease. Breast cancer isn’t about death. It is about pink ribbons, endurance, and survivorship.

I am not particularly moved by this project. The images try very hard, but they seem forced and largely uninspired. And although some may find inspiration in its images, my view is that as a body of work it objectifies the surgery, the scars, the physical detritus of breast cancer. Although I have only just heard of it, the project has been traveling the United States for the past two years “showcasing the brave subjects who bared their bodies for the camera, in the name of survivor solidarity.” (Source.)

Bullshit.

I am an enthusiastic supporter of David Jay’s SCAR Project. And it is largely because of the foundation on which the project has been constructed: “The SCAR Project is an exercise in awareness, hope, reflection and healing. The mission is three-fold: raise public consciousness of early onset breast cancer, raise funds for breast cancer research/outreach programs and help young survivors see their scars, faces, figures and experiences through a new, honest and ultimately empowering lens.” Jay also includes men among his subjects.

The women who pose for the SCAR Project are not representing some existential depiction of disease. They are there to show the pain, the disfigurement, the life changing hell that this is breast cancer. Indeed, as the project proclaims: breast cancer is not a pink ribbon.

I think that it is time to rip to shreds the idea that breast cancer is a rite of passage for women. We need to acknowledge that despite the pink camouflage, those of us with breast cancer withstand the barrage of treatments most other cancer patients undergo: oral drugs/chemotherapy, IV chemotherapy, radiation, and surgery because we have a disease that can kill.

We must stop romanticizing this deadly disease through ideas of bravery and survival skill. Breast cancer patients are no braver, stronger, or aesthetically pleasing than anyone else who must experience this dreadful disease. And remember that many with metastatic disease have no outward signs that they have breast cancer.

And we need to stop putting women on pedestals, for as soon as a woman stands there she loses her identity. She is reduced to her being identified with her body parts or how she appears to the senses. She becomes a scar, an implant, a loss.

I am much more than that. We are much more than that. It is time that we demanded nothing less.

In what has become an early spring event, I am looking at my second bone tumor crisis. Just at the moment that I felt fabulous and had an energy level that I had not felt since before I was diagnosed with this sludge, I got nailed with intractable pain and disability from a tumor that has been in my sacrum since I was initially diagnosed with metastatic disease in August 2012. I just couldn’t believe my luck. Literally two days after telling my director that I couldn’t wait to dig in at last, I was felled with severe pain that truly came out of nowhere.

A routine PET/CT and one MRI later, it was revealed that the 2.7 cm tumor had grown to 3 cm. But the great news was that the primary tumor in my breast was smaller and nothing else was lighting up in my battered frame. The site was biopsied and its makeup changed to a limited degree. Where I was ER+/PR+, HER2- at initial diagnosis, this time I was PR-.

To deal with the pain and kill this thing, I am going through my second course of radiation. While radiation is no picnic, this time it hasn’t been so bad if you take the long view.

For one thing, the workflow in the radiation oncology unit has changed for the better. The staff has been wonderfully supportive and professional–really outstanding! I had to have a frame made to keep my legs in the right position, but that was not a big deal. And while the reality of laying on a table while a total of 70 seconds of high dose radiation in six positions is beamed into my body still freaks me out, I’m tolerating it pretty well.

The first two days I had outrageous nausea and was drowned in fatigue (which caused me to miss the Black Sabbath concert, dammit!). I am still in some pain that keeps me off my feet and the fatigue is like a cloud over my head, but I can detect mild improvement and hope to be pushing that damned boulder up the hill once again in a few days.

So besides missing the concert it all seems to be moving along as planned. Except for the email I received from the nurse practitioner on behalf of my physician. Seems the doc wants to change up my medication since the tumor wasn’t responding to the Exemestane. She put before me a couple of choices.

Behind Door Number One is the the choice of Exemestane + Affinitor. Yes, this little dandy of a drug is used to treat breast cancer (and other cancers), usually after other cancer medications have been tried without successful treatment. The more common side effects are bloody nose, chest pain, weight loss, cough, diarrhea, fever or chills, mouth sores, nausea, bleeding gums, extreme fatigue, and vomiting. Oral chemotherapy. Fabulous!

Behind Door Number Twois the choice of Exemestane + Faslodex. This is used to treat hormone receptive positive breast cancer in women who have gone through menopause and whose disease has spread after treatment with antiestrogen medication. This is given monthly via two injections into one’s gluteus maximus. Side effects include commonly reported side injection site pain, nausea, muscle, joint, and bone pain, headache, tiredness, hot flashes, vomiting, loss of appetite, weakness, cough, constipation, shortness of breath, and increased liver enzymes. Sweet!

And there is always a Door Number Three. On first glance it doesn’t seem like much of a choice, but the lure of knitting fiber, wholesome milk, and adorable cartoon animals are the clear winners in this choice before me. I pick this one!

Personally, I have some issues with the choices from the start. Given that this tumor is now on its way to permanent destruction and everything else in my body has responded quite positively, I am quite content to wait until further scans to make one of these choices. After all, these two tumors have been there since the start and have always been active, even if they were stable. I meet my new medical oncologist in a few days and will discuss it then. (My former oncologist has moved on to bigger and better things at Yale University, so this will make my fourth oncologist.)

First of all, I’m not crossing the line into chemotherapy–oral or no. Psychologically I’m not there. And, second, I already get one injection in my ass every month (Xgeva) and every three months another (Lupron). I’m not anxious to put my poor posterior up for more torture.

While personally this cancer experience has been pretty damned awful with regard to pain as the result of bone metastasis, in the grand scheme of things my cancer has been relatively well controlled. The lymph nodes and tiny lung lesions were resolved shortly after starting Tamoxifen and have remained so. I experience mischief in my axillary lymph nodes now and again (pain that comes and goes with no palpable nodes) and my primary tumor–though still intact–is much smaller. Bottom line is that I’ve been able to hold steady with systemic hormonal therapy. But chemotherapy? That is the proverbial line in the sand.

When I have to make that choice, my desire to live out a full decade is drastically diminished (or at least I think so). And even though I have to make all kinds of arrangements and contingency plans, I’ve predictably pushed it off. I mean, I don’t feel like making funeral arrangements for myself. But I suppose I have to face that all happening sooner rather than later; after all, people do it all of the time. Oh, yeah, and probably goodbye career! And it is not that death is in any way imminent–it isn’t!–but once I use up that last line of hormonal defense there’s no going back.

Chemotherapy is the tipping point when I have to make a deal and choose not what I want to do in my life, but how far I am willing to go to have any life at all.

Two upcoming conferences offer the potential of real benefit for women and men with breast cancer, and also to their caregivers, friends, and families.

Registration is now open for Living Beyond Breast Cancer’s Eighth Annual Conference for Women Living with Metastatic Breast Cancer. I had the pleasure to attend this conference in 2013 and I enjoyed the experience. For me the single-most life affirming experience was connecting with other women who have metastatic disease, as well as their caregivers. I was only nine months into my diagnosis when I attended. I had some issues with some of the workshops, but any criticisms I had (and they were really minor) were dwarfed by the opportunity to meet women who were just like me. It mattered not if you were just diagnosed or living with MBC for twenty years, the fellowship was instant. I faced a lot of fears that I had and left feeling empowered. Better still, I had the opportunity to meet people with whom I had already befriended virtually. This year’s conference will be held on Saturday, April 26 and Sunday, April 27. It is, hand’s down, the most reasonably priced conference I have ever attended, and fee waivers and travel grants are available. _______________________________________________________________ The Metastatic Breast Cancer Network has announced their Eighth Annual Conference for Those Living with Metastatic Breast Cancer and Caregivers. The conference will be held in conjunction with the University of North Carolina Lineberger Cancer Center in Chapel Hill, NC. Details aren’t available just yet, but save the date: September 19-21, 2014. Information regarding registration and travel grants will be announced on the MBCN website. I plan on attending the conference this year and I hope I will see you there!

I have another lytic lesion in my sacrum. When I saw the picture from my routine PET/CT it looked like the Eye of Mordor. The circle of the body was bright orange and there on the left, on the sacrum, bright white. Okay, maybe it looked like the Crossed Eye of Mordor–which would say a lot about my twisted evil cancer adventure.

Only two weeks ago I was strutting around like a happy peacock telling people that I had not felt this good since before I was diagnosed. And it was true! Oh sure, I still used the cane because my back would get tired and I needed support, but I felt great! My radiation oncologist told me that having so much fatigue in excess of six to eight weeks of treatment could not be attributed to radiation–not that long. Then I recalled that I stopped taking Letrozole in mid-December, a month later I began to feel improvement in my hands and joints and, it seems, energy. The drug was brutal and I am so glad that it is no longer part of my drug arsenal. In comparison, Exemestane seems to be much gentler on my body.

Now it’s back to two hours of MRI imaging, little ink dots (one can hardly call them tattoos), and that bloody Varian. Well, at least I know what to expect. But this is all short term stuff and the news was not all bad: my primary breast tumor has less uptake of the tracer, everything is either better or stable–except for my lesion. And since everything else is responding so well, it may be that my little lesion is an outlier–a tumor that does not respond to my current treatment because its characteristics are different. Little bastard.

Clearly no one informed me that when you have cancer you NEVER walk around like a peacock and tell people you feel better than you have in years. Apparently cancer is hypersensitive to the jinx.

But, then again, no one ever talks about metastatic breast cancer in the way that they talk about everything else. And by “they” I’m talking Komen. It seems that unless it’s a mammogram, BRCA 1/2 previvors, survivors, and walks for the cure, Komen has no interest.

The Kohl’s/Komen #talkpink campaign was a real exercise in hubris. First, they co-opted METAvivor’s 2012 Elephant in the Pink Room campaign. METAvivor is an organization that raises money for metastatic research–the very thing that Komen so consistently ignores. But, second, as they pursued their #talkpink awareness they did it on the backs of the 30%–the men and women with metastatic disease.

They did it on my back.

Were it not for metastatic disease, the narrative I told about my lesion would not need to be told. Heck, I wouldn’t even have a blog. Early detection and pink awareness aren’t going to cure me. I go to the Komen web page and I see a call for nomination for a 2014 “bat girl,” a link to ShopKomen, another link to Make Every Day Pink (TM)–yes, that phrase is trademarked. On Komen’s advocacy page there is not one reference to metastatic disease. Not one. There is a link to help you find a Race for the Cure ®. But why go on? There is nothing here that speaks to my disease in a way that shows that Komen is pro-actively lobbying on my behalf in any way. Indeed, to find information on any woman with metastatic disease one must click on the drop down menu, choose “Metastatic Breast Cancer,” and there–buried at the very bottom of the page–is a list of four or five women they have chosen to represent metastatic disease.

All this is to say that I have decided to OCCUPY @SusanGKomen and #Komen. I am not lobbing any ad-hominem attacks, but I am going to use it to shame them. And I will use this to educate others. If Komen thinks they can walk on my back after co-opting the property of an organization whose only purpose is to try to help me, I won’t be silent.

It never bothers me that when I take a stand against injustice that I may be one of millions; one candle in the darkness. Over time more candles come and the landscape gets brighter. My purpose is not to “take down” Komen–that would be ridiculous. I want to inform. I want to educate. And I want to tell Komen that they just can’t walk over my back without being called out and held accountable. And I will do it until I no longer can. I’m in it for the long haul. It is Komen’s turn to be jinxed.

My cause is small. It is humble. But “you must be the change you want to see in the world.” Mahatma Ghandi knew something about taking a stand against injustice.

You all know my feelings about Susan G. Komen (see my commentary here, here, and here). And it has always been puzzling to me that a woman whose sister supposedly died of breast cancer that metastasized would establish an organization that hardly mentions it and funds research for it far less than other organizations.

Komen (as an organization) possesses an innate hubris and avarice that allows them to treat those who infringe on their copyright with very heavy hands. It has over 200 trademarks all of which are watched over and protected by a well paid legal counsel. Komen thinks nothing of strong-arming charities for use of the words “for the cure.” In 2010, Komen legal counsel, Jonathan Blum said

“It’s never our goal to shut down a nonprofit,” he said, “and we try very hard to be reasonable, but it’s still our obligation to make sure that our trademarks are used appropriately so there’s no confusion in the marketplace over where people’s money is going.” [Huffington Post, 2010]

I would think as legal counsel that it would also be Komen’s obligation to ensure that they do not infringe on the intellectual property of other organizations. But apparently this is not the case. For as we see with the Elephant in the (Pink) Room campaign put forth by Kohls and Susan G. Komen, they took possession of the intellectual property of METAvivor without so much as a second thought.

When I saw this campaign for the first time I was not told that it infringed upon METAvivor’s copyright, but as soon as I saw it I knew it was so. In fact, it was blatantly obvious. When they were called out on it, Kohl’s Senior Vice President of Marketing called METAvivor President Kelly Lange and was apparently willing to do exactly what Komen has done for the past thirty-two years: throw up a few sentences about metastatic breast cancer and call it a day. Enough is enough.

METAvivor needs your help. The women and men with metastatic breast cancer that have been patronized for over thirty years need your help. Please continue to use social media to support METAvivor in this cause.

OCCUPY#talkpink with messages calling for Kohls and Komen to do the right thing.

This is no joke, folks. We need to pull out all the stops and do everything we can to support METAvivor while they work with their legal team. Hopefully they will be able to take steps to make Kohls and Komen cease and desist.

These organizations have a dimension of greed that is incomprehensible to me as an individual, and it is to that greed we must address our grievance.
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As a result of social media pressure, Kohl’s has finally reached out to METAvivor. As they open a dialog we must continue to apply the pressure. Continue tweeting because all of your tweets have an extensive reach. Every tweet brings both pressure to Kohls and Komen, andeducates. Keep up the great work and continue to help METAvivor.